The disabled are usually at the bottom of the poor, unable to pay for good medical care or housing. At least there are government programs in the United States to make sure that the disabled can take care of themselves and their families. Without these safety nets, the disabled have no way of working to take care of themselves or to pay for needed medical care or drugs. The government of Haiti will need to think about how they are going to care for people that cannot care for themselves. Just thowing the disabled to the wolves and forgetting about them is not the way to do this. Add the pubic stigma of being disabled and you have a recipe for disaster. With no government help and most companies refusing to hire the disabled and you have a group that is guaranteed to starve to death on an island that they have no way of getting off of. The United Nations has a significant group on the ground in Haiti that is used for peacekeeping but can and should be used to help the disabled. There should never be a group that is so shunned that they are allowed to starve to death with no medical help and no one cares. Especially where these people are disabled because they were the victim of a natural disaster, they did not create their problem, they are just trying to live through it. There must be rehab programs put in place to help the newly disabled to get the most out of their situation and to train them for jobs that they can do. Everyone wants to be useful and to work and take care of themselves and their family.

 The disabled are not usually thought of when designing a game, so it is great to see someone create a database of games and who can play them based upon ability. Perhaps if the disabled were to send letters to game companies like Electronic Arts and let them know that we buy games and would like them to keep us in mind when they design a new one. That we are customers that spend money like everyone else and that a little bit of work on their part to make games easier for the disabled to play could translate into more money and profit. In this way we all win, the game company gains a new player and the disabled person has something that they can get some joy off of rather than just surfing the Internet. It can be difficult to find games that match up with different medical problems, and it is not fair to expect that shoot-em up games or fast driving games are going to be easily played by those that are quadriplegic. We have to expect that all games will not fit everyone and that lawsuits will just turn the game companies away from us when we want them to think of us as a group that wants to play.

When I was first injured I was still able to play most arcade games well. However, after complications from CRPS (a nasty pain generator from spinal cord injuries) I can only play turn based games or card games. That is ok for me because I can still do fun things and just have to change what I look for in a game. The moral of the story here is to pick the game that fits with what we can do and not expect miracles from game companies or console producers. Most controllers have tiny joysticks and lots of small buttons to press. No quads need apply to those controllers and the games that use them. However not all consoles are the same – Nintendo has changed the game with their WII console. The WII controller is a dramatic change in game controllers and may be the first to be disabled friendly. By allowing the user to swing or twist the controller the gamer can duplicate the swing of a tennis racquet or the turn of a car steering wheel. This makes for a fun experience that does not require hitting a zillion buttons to make a game work. Hopefully the other game makers will take the WII controller and expand on it so that everyone, including the disabled will have an easier and fun time playing games.

Few people realize how important it is to have handicapped parking spots that are available to those that need the spots. To the able bodied it is no big deal walking a few more meters and since they use doors rather than a ramp they do not appreciate how do you get out of your vehicle when your door doesn’t open all the way. It is worse when you come back and someone has blocked your ramp door so that you cannot get back into your vehicle until the miscreant that has parked either illegally or improperly drops by to drive their vehicle away. We all deserve access to stores and other places that we can get to by driving. The handicapped lose that capability every time an able bodied person steals a parking spot and that is not fair to them or their family. While there is no law like the Americans with Disabilities (ADA) in the United States, but the UN does have a list of rights that the disabled should be guaranteed that most nations have signed. Since we cannot expect those in society to behave correctly and park in the spots given to them, the government must create penalties that are severe enough that it is not worth it to break the law. By adding points to the parking fine, drivers will indeed think twice before stealing that open spot that is right near the door.

• www.caregiver.com
• www.familycaregiver.org
• www.familycaregiving101.org
• Jewish family services (look up for your locale, there are websites for local chapters everywhere)

All of these sites are busy and have places for chatting, getting help and puboishing stories about other caregivers and what they did to survive. We have found that it is worthwhile to sign up on all of these sites because you can make friends both remotely and locally that understand what you are going through because they are in your shoes, and they may know of places to get help or money depending on your status. There is nothing worse that feeling that you are all alone, no one knows what you are going through and you are just stuck at home trying to keep your loved one alive and happy. These sites help get npast that daunting task thyat you face every day.

We will post all of this on our "useful goodies" page so that readers will still have access to it after this story is archived on the site. SCRN was created to help those that are disabled, or are taking care of someone who is. To that end we track and collect resources from across the country that makes your life easier. If you have a resource that we do not have on our site we ask that you drop a line to the webmaster and let him know about it. There are lots of local places that do awesome work but few know about it. That is sad because helpers that have people that are not utilized or money that is not distributed appears to show that need is not there. From previous experience we know that that is never the case, there is a lot more suffering than help that is avaialble. Help others that do not know where to turn, or have tried other avenues that have all turned up a failure.

The opposite applies as well. If you need help and don’t know where to turn drop us as line. We help people all the time in situations where the hospital has dumped their loved one on their doorstep and they do not know where to turn. It is a scary situation when you get home and medications from the pharmacy have needles and you have no idea how to administer the medication because the nurses at the hospital never went over the meds. We can help answer a lot of questions or point you to the right organization that can help. We have been there when I first came home and there was no one to help because we were not instructed on where to get nursing help, or that we could even get nursing care. That is also why chat rooms are so helpful because you can read what happened to others and use the resources that helped them. That is the way the disabled community survives, by helping each other to get your job done and to take care of yourself.

Before my injury three years ago I didn’t really think about the disabled until Christopher Reeves came on the scene. He forced everyone to think about the disabled and how to help all these people in nursing home and wheelchairs. Families were suffering trying to keep their injured family member healthy and to get medical care for them. Rehab is very expensive and most times Medicare will not pay for any of it. Without trying to get better there is no way that any of us that have spinal cord injuries will ever be able to get back to work or have a normal life. Medical care is more than money, but the disabled appear to be little more than cannon fodder for the pharmaceutical companies to ignore and forget about. It is hoped that the changes to the medical system going through congress will help the disabled in this country. No one wants to spend their life in a nursing home, but without money there are few famlies that can take care of their disabled member. It usually means that a spouse has to quit their job and now even less money is coming into the home. So we now ask these people to live at or below the poverty line and then refuse to give them their medications when the pharmacy bills go over $2700 a year. These people all had lives and jobs before they were injured and deserve better care than we are providing now.

The Christopher Reeves Foundation is a beacon that we can all work to help but we have to do some work on our own. If we don’t let our congress know what is needed in Medicare to deal with someone that is disabled, it will never be fixed. Medicare does not finance any research so we need to get others to help us on that front. There are some researchers that are making progress, but it slow and the money isn’t what we need because of the Great Recession we are all experiencing. It is impossible to expect those out there to donate to causes like the disabled when those same people cannot put food on the table. With the newly graduated experiencing a 19% unemployment rate, we can expect research and rehab help to slow to a halt. That means that the government needs to pick up the baton and help to continue the research that millions need. As Americans get older more and more will be forced into a wheelchair and be paralyzed. They will expect that their doctors will have procedures that will get them back to doing what they used to do but will run into a brick wall of despair. The baby boomers that helped make this country great will find out that they are turning into the forgotten members of society that have to live by practically starving to death and only have access to the oldest medications on the market.

Perhaps the baby boomers as a group will come together as the disabled groups never did and force government and companies to finance repars to spinal cord injuries. Only when voting blocks start demanding action will we start to see changes in Medicare and rehab that will help us all. Until then, we tip our hat to Christopher Reeves and what he did for all of us after his fateful injury all those years ago.

Just as we recommend that you stay in touch with your congressman and senators, we also recommend that you become part of local emergency simulations. Everyone has something to bring to the table and this lets the disabled become part of the action where they can help and community leaders learn about new people that can help during emergencies. Rather than sitting at home and staring at the television  get out of the house and help those around you. This not only lets you help others, but the community learns about you and what your needs are during an emergency. So instead of being stuck at home, the police know about you and can quickly send help to get you out of the house. Become part of something larger than yourself that changes throughout the year providing help and training to everyone. Don’t be just a victim that sits in the house waiting for something to go wrong, getting out of the house will make your life better by getting yo9u hooked up with people across all social boundaries.

Either a social worker comes to the home or you get a phone call saying that nursing care might be available to you – but they need a few pieces of information. At that point they start asking detailed information about your medical conditions (HIPAA violation?) and info about your home, mortgage company as well as what cars you own and bank account data. They then come back on the phone and say you qualify for nursing care — if you sign everything over to them. That is right, they will then ask you to sign over your home, cars, bank accounts and Social Security checks over to this entity. Supposedly then the state will send your nurses to help you for an undetermined amount of time and and undetermined type of care. When asked how long we could then live in our own home if we signed up for this, we were told that "most times we don’t remove the previous owners from the home". When papers are sighed, the state immediately takes control of your home, cars, bank accounts and Social Security checks. That means your car(s) disappear, officials may show up to throw you out of your home, and you can no longer write checks from your accounts.

The state now decides what you can pay for groceries, medication, or anything else. You are allowed to own $2000.00 of personal items when you sign up. If you own more than $2000.00 of items you must hand them all over to the state. That flat screen TV – off to the state. That really nice stereo you picked up 5 years ago, the state owns it now. The computer you purchased last year, a state official will really appreciate that new iMac. You will be forced to live in virtual bankruptcy unable to purchase any items for yourself or your family. Christmas is permanently canceled because you are no longer allowed to own anything.

This scam is real and the states are implementing it. We know that Georgia is doing it and we are trying to find out which others have signed up. This is a giant warning to the care givers that these state officials will try to get the disabled to sign everything over without the care giver in sight. They know that they can take advantage of the elderly with Alzheimer or the disabled taking strong drugs, neither of which are capable of making important financial decisions. This insanity is sanctioned by the state and they will push it hard that this is the only way to get nursing help in the home. Once this is signed up you immediately lose everything, these is no recourse and there is no way of getting your property or money back. Kiss your social security check goodbye, hope you don’t need it to pay your mortgage, prescriptions or daycare.

We would like to collect stories about this happening to our readers. If you have experienced this please drop us a line and tell us a little about what happened and what state was involved. We want to create a list of states to avoid or at least be aware of so no one is abused.

We have all heard of the hecklers in the town meetings over the last few weeks but it is unbelievable what happened to this woman in New Jersey. Regardless of where you are in the political spectrum, there is no excuse to verbally assault someone who has the floor during a meeting. Plus there is no reason to attack someone personally because you do not want to hear their view. In a democracy we expect different ideas on how things are to be done so we can pick the best one for our country’s needs. No one has exclusive rights to good ideas such that no one else can speak their mind. Those that believe that  need to take an American government class so they can get a grasp on how this republic operates. Everyone has a right to speak their mind, regardless of how horrible it sounds to you.

How many of those that heckled this woman would be willing to drop their cable and Internet connection and live in public housing. If you do not have a chronic medical problem then you truly do not understand how things work for those that rely on Medicare and Medicaid. Many pills and procedures that are used everyday on those with private insurance find they cannot get help with Medicare. The dough nut hole requires people to come up with thousands of dollars of their own money before catastrophic care kicks in. Many live on social security and do  not have thousands to throw around so stop taking their medication until the beginning of the new year. That can be a death sentence to those on heart or cancer medications. Issues like these need to be fixed so that we do not kill our citizens in the name of controlling costs. Those on social security are not people that should not have rights. We have all worked hard and paid into the system and now find ourselves severely injured because of an auto accident or have been forced to retire at 65 and now are trying to make ends meet.

If we don’t deal with this soon, we will truly have two type of people in America, those that have and those that have not. Money should not be the only measurement to determine if someone should live or have constitutional rights. Those that work and are in power have a responsibility to help those that cannot  help themselves. If we don’t then we will not continue to be a world power as social issues will eat away at the basic structure of how our country works. Lets help everyone to be the best that they can be so we don’t have situations like we are creating now. Lets make sure we keep a country that gives everyone a chance to succeed so that everyone wants to emigrate here. If we don’t we will experience the brain drain that many countries experienced over the 20th century.

The county has been trying to deal with a $444 million dollar shortfall from fewer taxpayers living in the county and those that cannot do for themselves are now under attack. More than 1000 protesters filled the Dade County hall waving banners and demanding to be heard. After seven hours of testimony from home owners and those that need basic programs the county offers, city commissioners decided to leave property taxes at previous levels. During the heated exchange between protesters and officials, commissioners shut down people that demanded to know why top county officials received large pay bonuses at a time when budgets were steadily shrinking.

It is a sad day for those that live in Dade County as it is obvious that more and more programs to help the disabled are going to either be shrunk or cut out completely. The disabled live off of Social Security Disability payments which essentially allow you to live in a tiny apartment and pay for food. That is it. Many depend on county programs that provide food and medical services to those that cannot afford to pay for these bills. It is unclear what the disabled are going to do to feed themselves when food programs are cut off but something needs to be done. All of Florida is under extreme stress of losing virtually all of it’s high tech companies to the "research triangle" from Atlanta to Charlotte, NC to Nashville. Engineers and computer specialists that made $80-$125k a year were paying for large houses that allowed the city to thrive and pay for services the disabled need to live. Under governor Lawton Chiles, most of those companies moved out of the state during a recession. Now without companies like IBM, Sun Microsystems and Siemens tens of thousands of engineers have moved to the research triangle, leaving a giant hole in the budget. These "halfbacks" as they are called, are finding that their tax, energy, and insurance bills are almost half what they were paying in Florida. Others found out what these engineers did and now Florida is fighting a steady flow of residents out of their state.

Spinal Cord Resources moved from Fort Lauderdale 8 months ago to Atlanta and found bills to be much cheaper and better schools and universities very close to the city. Also, major spinal cord research facilities are in Atlanta including the Shepard Center, Georgia Tech and Emory University. Florida has it’s hands full trying to figure out how to get higher paying jobs to an area that has been decimated by bad political decisions and a recession that is entering it’s second year of existence.

Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness

A training curriculum provided by the Community Emergency Preparedness Information Network (CEPIN) and developed by and for emergency responders and deaf and hard of hearing consumers

TOPICS COVERED:
- Understanding Hearing Loss: Communication modes and barriers
- Emergency Responder Roles: What do they do? What tools are needed?
- Emergency Preparedness: Responsibilities of consumers and responders
- Partnering for a Safer Community: How to become involved in community preparedness, response and recovery activities

The information presented in this training will benefit anyone involved with emergency planning, response and recovery efforts. The primary focus of the curriculum is direct interaction between emergency responders and people who are deaf, hard of hearing, late-deafened or deaf-blind. The Train-the-Trainer course is intended to teach participants how to provide “Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness” to citizens in their community. Check out our website at www.cepintdi.org for registration forms and more information.

TRAINING DATES & LOCATIONS:

November 6
Salt Lake City, Utah

November 16 & 17
Austin, Texas

December 5
Burlington, Vermont

TBA
Florida

NOTE: ASL interpreters, assistive listening systems and realtime captioning will be provided. All other accommodations will be provided upon request.

CEPIN would like to thank Hamilton Relay for providing lunch and refreshments at all official trainings being provided this grant period.